An Open Letter to Providers Treating Women with Hemophilia

I am writing to you on behalf of all the women with a hemophilia mutation. My blood sisters have varying medical diagnoses: asymptomatic carrier, symptomatic carrier, mild hemophilia, moderate hemophilia, and even severe hemophilia. Their diagnosis is often linked to the philosophies of their hematologist or hemophilia treatment center.

Please test factor levels at birth for girls who are born into families with hemophilia. Extreme lyonization may have occurred. The patient could have moderate or even severe hemophilia. Take the time to determine if bleeding issues are possible. Injuries can happen. Make sure you and the patient’s family have the best information available.

When a male is diagnosed with hemophilia, please insist that all connected women are tested to ensure their safety.

Test factor levels with the chromogenic factor assay. Studies suggest the chromogenic factor assay is more precise.

Hematologists and OB-GYNs should partner to address abnormal monthly bleeding. Women have the right to live without the limiting reality of horrific periods. Some women bleed 25 to 50 percent of each month. They need your help.

Listen to women and ask questions. Ask them to help you understand by photographing their bleeds. Ask them to show you photos of their scabs. Order ultrasounds and other diagnostic tests to look for bleeding. Get baseline joint imaging for arthritis. Don’t draw conclusions without taking the time to understand the full clinical picture.

Please do not make blanket statements. For example, “You will only need factor for surgery or a major accident,” or “Hemophilia carriers do not have bleeding issues.” There are many unknowns with hemophilia. Unless there is a scientific study that supports your statement, do not share information that is outdated at best. At worst, it could be devastating if someone needs treatment.

For heaven’s sake, if a woman takes factor for a possible joint bleed and the pain goes away, don’t tell her it was a placebo effect. Women with mild hemophilia and symptomatic carriers get joint bleeds. Anti-inflammatory medications don’t address the pain because the underlying bleeding goes untreated. If you genuinely believe that factor is causing a placebo effect, please reference a double-blind study. Without a double-blind study, your conclusions lack scientific validity and undermine women who are trying to access care.

Don’t be afraid to say you don’t know. Research treatment for women’s bleeding issues before developing a care plan.

Reach out to hematologists who have experience with treating women successfully, or to the Foundation for Women and Girls with Blood Disorders. Use your peers as resources.

Partner with women to create a treatment plan that addresses bleeding issues. Help them live their best lives. We want that for men and women alike, no matter the severity of their hemophilia.

Please be patient with women if they express anger or frustration. The average time between symptom onset and clinical diagnosis is 16 years. Their issues might have been ignored for decades. When you show compassion and understanding, you build a partnership. Women need reparative experiences with medical professionals to rebuild trust, which takes time.

Thank you to the providers who do the above. Please continue to educate and set an example for your peers. Women with bleeding disorders must get the support they need. We cannot achieve this without your advocacy and support.

Please do not turn our women away. Women with the hemophilia gene can manifest the disease. Reach out to and treat these women. You will be a gift to current and future generations if you do.

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Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to hemophilia.